Tube Weaning - Day 6

Today was another day of progress for Audra!  She had an all time high for both overall oral intake for the day and for one session.  This was the good news.  And now for the bad news.  She still isn't taking as much as we want her to and she had her first weight loss.  It was not significant but hopefully we can turn this around!  We are proud of the progress that she is making and are hoping and praying that she continues along this path.

I have been emailing with some of the moms that did the same program and have heart babies themselves.  One mom is in Ann Arbor and shared her feeding journal.  It is nice to have to compare - although every child is different, we know.  But it helps to see we are right on the same path that they were on and their baby succeeded :)

Tube Weaning - Day 5

Today was Audra's first tube free day! She was in a good mood with her new freedom. Now comes the hard part - eating all on her own. She ate more today orally than she ever has before. That is the bright spot. But this is still not enough. We expect that she will gradually build up over the next week or so. She has her ups and downs and we look forward to making more progress in the small steps that we can.

Last Tube Feed (we hope)

Audra just finished what we hope will be her last tube feed!! She took the most she has ever taken from the bottle today but it is still not enough. Now she just needs to pick up the pace.

All went well with our friends' baby's open heart surgery today. She is already starting sprints to come off the ventilator. Good news!

We hope to have good news of our own with Audra's feeds. When she wakes up next out the tube will come! Finally!

Tube Weaning - Day 4

Today is Day 4 into the tube weaning program and tonight the tube comes out! We are very excited and nervous about this.

We have been receiving great feedback for our net coaching. It is do great to feel like we have a plan and to be trying to do something to get rid of Audra's feeding tube. It seems like we have been living the definition of insanity - doing the same thing and expecting different results. So it is good to be taking steps to move forward.

Overall, Audra is doing well. She still gets frustrated and seems to wait for her belly to magically fill itself. But then she will go and have a good session. She still has a long ways to go but I do feel like we are making small steps in the right direction.

The blood draw yesterday went well and the results were good. Next up is the appointment at UofM to determine if we need to continue on the blood thinner for another 3 months or not. Hopefully NOT!

Also, thoughts and prayers are appreciated today as friends of ours have a little one going in for open heart surgery at UofM.

Tube Weaning - Day 3

Day 2 was another good day with Audra eating more orally than on day 1 and the most she has ever taken! At her 9 pm feed, you can tell she is worn out from the day and falls asleep shortly into her tube feed. She is only getting tune feeds at 9 pm and 3 am. Tonight we are skipping the 3 am feed. And then the 9 pm feed will go and the tube will come out.

This morning she is hungry but isn't interested in eating. Hopefully this improves quickly.

We have another blood draw this morning too. Hopefully this will be her last one for this clot! We have an appointment at UofM on September 10 to look to see if her clot is dissolved. Depending on how everything looks determines if we get to stop her blood thinner and the accompanying blood draws or have to continue them both for 3 more months.

Tube Weaning - Day 2

Yesterday was successful in small steps. Audra took more than she ever has orally and we only used the tube twice! Those were for the night feedings and we are most concerned with those.

Audra took more orally than her basal needs, which is awesome. And she is generally interested in eating when we are trying to feed her. Hopefully this continues. Trying to feed a hungry baby who does not want to eat is very frustrating. The tube supplements put us pretty close to what she would typically get in a day with a couple of throw-ups (glamorous, I know).

So far so good today. She has taken more than this time yesterday. We are not supposed to focus on the numbers but we have to keep close track of them, which makes it hard not the focus on them. We are supposed to focus on how she is eating - only feeding her when she is interested and stopping at her first sign of disinterest. Her weight was slightly above her starting weight from yesterday!

We still have a long way to go but things are going well! The next step is to drop the 3 am tube feed. Audra rarely wakes up for this feed so we are pretty nervous how it will affect the rest of her eating. Only time will tell.

Tube Weaning - Day 1

We are starting tube weaning today. It came about rather quickly. We found out on Thursday that our claim to insurance was not submitted as urgent. So it had to be resubmitted and we will not get a decision until Monday. We also found out that we could pay out if pocket and get reimbursed if insurance covers it. We had said all along that we would do it even if insurance doesn't cover it so we signed up.

Yesterday we got set up into the net coaching portal where we keep the feeding charts, communications, videos and such. We made a video and uploaded it early this morning. We got feedback from the Frau Professor Doctor (that is what a female doctor who is a professor is called in German) and we have already cut down her tube feed this morning. Here we go! Come on Audra! You can do this!!!

Today Audra rolled over for the first time. Maybe she was just so excited about starting the tube weaning?!? Okay, I doubt it. But we are very glad she is rolling over. Another reason to get rid of the tube!